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Usher Syndrome Awareness Day

Saturday, September 19, 2020

USHER IN A CURE: Help make a profound difference in the lives of thousands of children and adults

Saturday, September 19, 2020 is Usher Syndrome Awareness Day, and your voice can make an impact across the country, and across the globe.

Usher Syndrome Awareness Day seeks to bring attention and raise awareness of the most common genetic cause of combined deafness and blindness. Usher syndrome (USH) is a rare inherited disease – passing from parents to children -- that affects at least 25,000 people in the United States, and over 400,000 worldwide. Most children with Usher syndrome are born with moderate to severe hearing loss. Vision loss is progressive and usually occurs at a young age or through adolescence.

Why September 19?

In 2015, the Usher Syndrome Coalition, an organization of individuals and families of children with Usher syndrome working to connect the global USH community, declared the third Saturday in September as our global “Usher Syndrome Awareness Day.” This day falls near the autumnal equinox in the northern hemisphere, marking the start of days that contain more darkness than light - a powerful metaphor for the threat of Usher syndrome.

The Need for Action:

The COVID-19 pandemic we are all experiencing has profoundly impacted the lives of each of our families and loved ones. However, for the tens of thousands of Americans who are deafblind due to Usher syndrome, and the hundreds of thousands living with USH around the world, the impact of social distancing on a community that relies on touch has been devastating. For decades, adults and parents of babies born with Usher syndrome have been told “there will be a cure in ten years.” In the year 2020, a year elevated as the landmark for restoring vision, we are still falling far short. Let’s bring curing blindness back into focus. Let’s make Usher syndrome history.

How You Can Help:

  1. Ask your state, town or region to recognize Usher Syndrome Awareness Day. (Check out this guideline for requesting a state proclamation from your governor.) Find your Governor
  2. Contact your United States Senator (See sample letter): Find your Senator
  3. Contact your U.S House of Representatives Member (See sample letter): Find your Representative
  4. Write a letter to the editor for your local newspaper (See sample letter)
  5. Invite the world to #MeetUSH: Share a baby photo of yourself with a current photo ("Then vs Now") and how Usher syndrome has impacted you, especially during the current pandemic and social distancing. Parents, you can send photos of your child and share your personal story about how Usher syndrome is affecting your family, particularly in the days of COVID-19. Tag us on social media @USHCoalition with #MeetUSH, or send your photos and story to Krista at (See sample Instagram post below)
Sample Instagram post showing side-by-side photos of Emily as a child and Emily not as a 23 year old, along with a caption describing herself and her experience living with Usher syndrome

2019 Highlights

Take a look at some events that took place in 2019 in recognition of Usher Syndrome Awareness Day:

September 14: Camryn's Race for Usher Syndrome | Roanoke. Virginia
September 21: Celebrate with friends and ProTactile ROCKS!! | New York City, NY
September 21: 5 Points Music Foundation to Honor Usher Syndrome Awareness Day with Ana Popovic and New Initiative | Roanoke, Virginia
September 21: USH One See 5K & 10K | Lafayette, Louisiana 
September 21: Usher Syndrome Awareness Rally | National Stadium, Surulere, Lagos State, Nigeria

2019 Proclamations

  1. USH Awareness Day Proclamation | Mississippi 
  2. USH Awareness Day Proclamation | New Jersey
  3. USH Awareness Day Proclamation | Middletown, NJ
  4. USH Awareness Day Proclamation | Pennsylvania 
  5. USH Awareness Day Proclamation | Wayne County, PA
  6. USH Awareness Day Proclamation | Virginia 
  7. USH Awareness Day Proclamation | Minnesota 
  8. USH Awareness Day Proclamation | Washington
  9. USH Awareness Day Proclamation | Ohio

Are you planning any other events around Usher Syndrome Awareness Day? Let us know and we'll help spread the word!

Show the world how you are raising awareness for Usher syndrome in honor of our day. Share your efforts on FacebookTwitter and Instagram using the hashtag #USHDAY. 

Thanks to your support and dedication to introducing the world to Usher syndrome, the Coalition is able to continue our work to help and connect all in our community. We look forward to celebrating this day with you.

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